so that I will sleep better. It is my strong recollection that he does not believe in the family theory and he was directly asked -- something to the effect of ...weren't the MLV's supposed to simply reflect more of XMRV's variability.. and his answer was that he now guessed not. I'm going to stick with that. It is my recollection...I don't have tape on that (I forgot to turn my recorder on until later) and if it's wrong it's wrong and I apologize.

On the other hand Dr. Alter did in conversation mention the two reasons that have struck him... the passage of the cell line through mice and the lack of genetic variability in XMRV... the second in particular suggests XMRV is not a human pathogen. If Dr. Mikovits can somehow get that genetic variability data out into publication, that would, as I have noted change everything. Other than that its up to those studies.

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Thanks, Cort, for clarifying that. You heard some off-mike conversation to which the rest of us were not privy, and which covers some of my questions. I'm not sure how PMLVs that are not XMRV exactly can be considered part of the nonvariant XMRV argument, since they are obviously distinctly different to the point of being polytropic rather than xenotropic. However, it sounds like the question was directly asked to Dr Alter and you heard him say that he guessed now that they aren't an indicator of XMRV's variability.

As with everything else, we'll just have to wait until the science sorts itself out to know the whole story.

I would like to know why WPI has not run the IAP test on their samples?

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Wasn't there some discussion about the possibility of IAP showing up false contamination readings?
I can't remember the exact details now - I'll see if I can find them.

ETA:
Here's some details:

One thing is very clear, though, Dr. Mikovits does not support using the IAP test in XMRV retest studies, eg; The WPI will not recommend any XMRV positive patient participate in any study that uses the IAP assay ..it is not validated..never has been.

Mikovits has questioned whether the IAP contamination test might falsely identify XMRV as a contaminant
but that did not happen in the B-cell study; the IAP test showed no contaminants
in the positive B-cell lines.

Dear Cort
I can only say positive things about Dusty Miller. He is an excellent scientist with more than 30 years experience in gamma retrovirus study. I met him at the NCI closed meeting on XMRV in July 09 when we first presented these data prior their publication in Science. I don't know him well because our paths did not cross until that meeting. He is a long time colleague of Sandy Ruscetti (I would encourage you to contact Sandy or Frank) if you would like support from co-authors of the science paper. Our work could not have been done without the expertise of Sandy Ruscetti and I have no doubt that Dr Miller's lab is fully competent and can add significant insight into the potential mechanisms of neuropathogenesis as Sandy's lab has done.

As for the IAP assay, I strongly advise not to use the IAP assay as a measure of mouse contamination. Dr Evans showed that the mobilization of endogenous retroviruses in mice after infection with an exogenous retrovirus (J Virol 83:2429, 2009, attached). This occurs with great frequency even after one day of infection. Dr. Evans recently presented at a meeting that IAPS can be packaged and mobilized. This says that a human infected with XMRV might also be infected with co-transferred mouse IAP sequences or polytropic sequences. Moreover, infectious retroviruses can continue to package these sequences at a high level. My concern is that the finding of IAP sequences may not be evidence of contamination but of real infection (or unrelated).Since the mitochondrial DNA in the Lo et al. publication is every bit as sensitive as the IAP assay, and has been used for all studies at the WPI as well, why not use it?

Given my scientific concerns about mouse based viral sequences, which can easily be packaged and moved by XMRV/MRVs being used in any study as an assay for contamination, I cannot advise any patients in good conscience to participate in such a study. I would be happy to discuss anything in this email with Dr Miller at any time but would politely ask that you not post this email. It would be better for Dr MIller, the Ruscettis and I to talk directly and in that way we can all present a unified front to the entire patient community. It is so important that the patients concerns be heard given how politicized this complex problem has unfortunately become. I have cc'd Dr Miller.

Thanks, Cort, for clarifying that. You heard some off-mike conversation to which the rest of us were not privy, and which covers some of my questions. I'm not sure how PMLVs that are not XMRV exactly can be considered part of the nonvariant XMRV argument, since they are obviously distinctly different to the point of being polytropic rather than xenotropic. However, it sounds like the question was directly asked to Dr Alter and you heard him say that he guessed now that they aren't an indicator of XMRV's variability.

As with everything else, we'll just have to wait until the science sorts itself out to know the whole story.

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Well just to get clarification I've contacted Amy to get her response to this and the conversation that supposedly went on behind the scenes with reporters. We'll see what she has to say. Specifically if Dr. Alter said he is leaning towards the contamination theory. I'll report back.

Like I said I wish I had remembered to turn on my recorder....but my impression that they are moving very strongly in that area. They feel that that's the next step and that's what they are concentrating on. I don't remember anything specific about treatment trials or specific drug companies. They are both completely confident in XMRV. Its really quite stunning to see the confidence on both sides .

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Thanks, Cort - is that "they" as in WPI or other people? I wonder if WPI have the resources for a trial.

Well just to get clarification I've contacted Amy to get her response to this and the conversation that supposedly went on behind the scenes with reporters. We'll see what she has to say. Specifically if Dr. Alter said he is leaning towards the contamination theory. I'll report back.

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I said two things. One was that Alter was leaning to Coffin's theory that XMRV came from the lab and got into the WPI's samples (that one I've removed).

The second is that he is not leaning toward the MLV's he found being part of the XMRV family.

Well just to get clarification I've contacted Amy to get her response to this and the conversation that supposedly went on behind the scenes with reporters. We'll see what she has to say. Specifically if Dr. Alter said he is leaning towards the contamination theory. I'll report back.

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Thanks for taking the time to do that, Ernie! It was not my impression from reading Amy's report that she came away with the same impression Cort did, so I'll be very interested to hear what she has to say specifically about that behind the scenes discussion.

And what the heck? Coffin thinks people with ME/CFS are really ill and that there may be a different retrovirus involved why is this not a headline? The point really is to find the cause of this disease, so let's maybe try to find the cause. It's almost assumed by some that a retrovirus is involved in our illness (but maybe not XMRV). To me that is news. That is a shift in the dialog. So let's find the darn thing.

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Well I find this pretty exciting and I think Harvey Alter said something similar (think he said a virus rather than a retrovirus specifically).

We could do with people of this calibre on our side, people who do top-level biomedical research rather psychologists peddling their warped theories. People may not agree with Coffins/Alters particular arguments but this is science and scientists argue for a living. Let the debate flow on - the truth about XMRV will emerge eventually and if it turns out not to be the cause of CFS we could still have some heavyweight scientists rooting to find out what else could be causing this illness, other than simply 'bad attitudes'.

It seems to me that we are still in the fact gathering phase--yeah, with tentative conclusions and hypothesizing going on. But moving to firm conclusions, though it may alleviate the anxiety that dealing with the unknown brings, this is still premature. I liked Harvey Alter's style very much, as he is ABLE to hang out in the unknown in a positive way, while pursuing and considering the evidence. To say that someone has a good argument or a reasonable hypothesis is not the same as agreeing with it. Harvey Alter brought up the story of Solomon to imply that there is a "on the one hand" and "on the other" going on here, and like Solomon, he was not going to decide, but to allow the facts, as they come in, to speak for themselves.

I am appreciating very much all the hard intellectual work going on in this thread to try to sort out the truth. I wish I could follow all the details as well as a lot of you here, but my brain now only does overviews.
s

Thanks for reporting what Judy said about the amino acids and the reason why current retrovirals might not work for xmrv. I wish you would have turned your recorder on, so we could have heard more about what Judy had to say.

Cort, I am not sure you could write an article on xmrv where your disbelief in xmrv did not show through. I don't think I could write one where my belief did not show through. Maybe if you used your recorder, you could remember exactly what Alter, Judy and others said. I know My foggy brain could not remember everything.

I am too sick to attend these conferences and interface with these great scientists in person. You are very fortunate to be able to attend and I appreciate you reporting back. Please remember to use your recorder next time. You never know what gives an ill person hanging on every word a bit of hope. Your comment from Judy did that for me.

Have you ever read Osler's Web? I am reading it right now and it is so sad to see how some have treated very ill people with total disdain. There is still not an approved treatment for CFS. The very definition states that if you are helped by a treatment, then you don't have CFS. If that is not a catch 22, I don't know what is?

Alter said we have taken the first step by showing there is most likely an infectious cause to this illness. The particulars need to be worked out and treatments provided, not in 3 years, as Judy said, but now. I am so glad that Judy moved on to translational research and that drug companies are interested in finding a treatment. Thanks for passing on what Judy said. As I said, it gives me something I don't have a lot of, hope.

I said two things. One was that Alter was leaning to Coffin's theory that XMRV came from the lab and got into the WPI's samples (that one I've removed).

The second is that he is not leaning toward the MLV's he found being part of the XMRV family.

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Wow. I knew I am suffering PEM today, but I didn't realize earlier that my fog is as bad as it is. I haven't been able to keep things straight all afternoon.

Let's see if I've managed to get it straight finally ~
Dr Alter is leaning towards XMRV specifically being an accidental lab creation from the 90's, but the retroviruses found in PWCs by his lab (and presumably WPI) are not variants of XMRV.

If I have this correct, then it appears Dr Alter is thinking that perhaps Lombardi/Mikovitz/Alter/Lo found a new human retrovirus that is related to murine viruses but is not XMRV specifically. Or am I still confused?

It is my strong recollection that he (Alter) does not believe in the family theory and he was directly asked -- something to the effect of ...weren't the MLV's supposed to simply reflect more of XMRV's variability.. and his answer was that he now guessed not. I'm going to stick with that. It is my recollection...I don't have tape on that (I forgot to turn my recorder on until later) and if it's wrong it's wrong and I apologize.

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Cort-- Your assessment is incorrect.

Here's a quote from Mindy Kitei's blog regarding this matter:

" I interviewed him about his XMRV study for my blog, CFS Central.

Alter [the NIH researcher who, along with Shyh-Ching Lo, found XMRV related viruses in CFS patients] said that he does indeed believe that his group and Mikovitss group are looking at the same retrovirus. Viruses tend not to be homogeneous, Alter explained. The fact that we didnt find XMRV doesnt bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. Its not one virus. Its a family of viruses. "

Well just to get clarification I've contacted Amy to get her response to this and the conversation that supposedly went on behind the scenes with reporters. We'll see what she has to say. Specifically if Dr. Alter said he is leaning towards the contamination theory. I'll report back.

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I was going to write that it will be good to hear what a real journalist (Mindy) has to say about this. But Dreambridie's excellent post above has pre-empted me.

Cort, I think unless you can offer reliable quotes by Dr. Alter, you shouldn't present this as fact here. It doesn't further the debate in any way. If you are not sure you remember correctly, send your piece to Dr. Alter and ask him if that is in fact what he thinks and would like to see published.

It seems most people who watched the conference, including me, came to a very different conclusion.

Also your explanation why you didn't include Dr. Mikovits' rebuttal of the Satterfield interview is a bit thin.

Alluding to rumours and the whole "I know something but can't tell you" game is really starting to get annoying. You know you have a huge responsibility here and in everything you put on your "page 1" you should be extra extra careful to get it right.

I think people who are trashing the reputations of some of the best scientists in these fields should take a look at the careers of these people.

For the first time ever, some of the most objective, competent scientists on this planet are involved in CFS research. Babbling a bunch of nonsenical conspiracy garbage is not helpful to keeping this calibre of researcher involved.

Wise up. These are good people. The answer is what the answer is. That's science.
And we don't have a definitive answer yet.

I'll take people with a long track record of quality published research in their field every time before researchers whose "results" appear in the media. Where is De Meirleir's H2S research, about which he saw fit to hold a London press conference for major media ? Give me a break.

Keep spouting the conspiracy crap against this calibre of researcher and eventually we will go back to having the type of researcher who publishes papers in lesser journals, makes a big song and dance of being "for" the patients, and tends to make media headlines for what they say rather than what they publish. There are a few of them involved in CFS research still. They contribute virtually nothing to the field but their careers trundle along. ( Incidentally, so I'm clear : Judy Mikovits is not in this group ).

We have been royally screwed by the medical profession for many years and are fully entitled to be angry. But high-quality virologists are not the people to be angry at. I'd love to see this calibre of researcher take some further interest in CFS. That's less likely to happen if they see people accusing them of ridiculous levels of manipulation.

Having said all that, in speaking of manipulation, I wish more outside researchers were aware of the extent of manipulation that is possible with regard to cohorts. How many people in some of this XMRV research actually had the "core" illness - whatever the hell it is ? Has manipulation of cohorts taken place in CFS research ? What criteria are used ? How rigorously are they applied ?

Have researchers in past CFS research been careful in choosing their cohort ? No chance - unless they were setting out to get a particular answer, of course. Diagnostic criteria is the "elephant in the room". Have XMRV researchers been careful in choosing their cohorts ? That's a very interesting question. McClure's cohort from Simon Wessely ? Yes, that's hilarious. If it wasn't so damaging.

So we are entitled to be angry - damn right. But not at the wrong people. And I'm knackered now....What a life we lead.

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KFG,

I don't see anybody claiming conspiracy in this thread, however, I claimed SPIN. Regardless, I think anybody will agree "quotes" are needed to accurately convey what a particular scientist says, so the facts are accurately portrayed.

Regarding conspiracies. You may want to watch the Dr Kenneth Friedman video testimony from the SOK to determine if "two or more people can agree to deceive, mislead, or defraud others of their legal right"(conspiracy definition from wiki) in the CFS research/education field. I put his video testimony in the conspiracy thread, because what he describes sounds like a conspiracy to me. (ie: two or more people agreeing to deceive, mislead, or defraud others of their legal right")

Regarding objective. Disagree Coffin is being objective by wanting to leave XMRV behind now that he just found XMRV.

(edit) regarding objective science: maybe somebody can tell me how science is supposed to work if the Government agencies holding the checkbook, and creating the definition of "CFS", are actively involved in trying to deprive patients of our health and rights?

I think people who are trashing the reputations of some of the best scientists in these fields should take a look at the careers of these people.

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Appealing to past credentials and reputations is merely an appeal to authority, which carries very little weight. It is, at best, tentatively meaningful in the absence of deeper understanding. But many here have moved well past such superficial metrics of research quality.

Their reputations are being "trashed" by virtue of their own efforts: conducting studies that conspicuously avoid the scientific method and fail to withstand cursory examination.

For the first time ever, some of the most objective, competent scientists on this planet are involved in CFS research. Babbling a bunch of nonsenical conspiracy garbage is not helpful to keeping this calibre of researcher involved.

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Your labeling them "objective" and "competent" doesn't make them so. Again, ironically, I think you are overlooking the low caliber of their recent actions and research and clinging to the "reputation"-laced narrative that they are "top-notch" and "objective."

I repeat, their research, actions, and words of late do not match the image of them as "objective" and "competent."

And throwing around words like "conspiracy" is, I hate to say, the lowest form of argumentation. It is a technique used to emotionally bully people out of certain lines of discussion.

I'll take people with a long track record of quality published research in their field every time before researchers whose "results" appear in the media. Where is De Meirleir's H2S research, about which he saw fit to hold a London press conference for major media ? Give me a break.

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Again, appealing to reputation and credentials to obscure glut of recent flawed research.

Furthermore, it's very telling that you are soooo concerned with DeMeirleir's media appearance, yet you say nothing of the Wellcome Trust press release or the aggressive media campaigns of McClure, Coffin, and others to end XMRV research.

Keep spouting the conspiracy crap against this calibre of researcher and eventually we will go back to having the type of researcher who publishes papers in lesser journals, makes a big song and dance of being "for" the patients, and tends to make media headlines for what they say rather than what they publish. There are a few of them involved in CFS research still. They contribute virtually nothing to the field but their careers trundle along. ( Incidentally, so I'm clear : Judy Mikovits is not in this group ).

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The fallacy to word ratio here is impressive. More "conspiracy." More appeal to authority. More historical and political ignorance. More straw men. More character assassination.

When you refer to researchers who make "a big song and dance of being "for" the patients, and tends to make media headlines for what they say rather than what they publish," I assume you are talking about John Coffin. After all, he's been on quite the media and conference tour pumping up his unpublished recombination paper. And his being "for" the patients amounts to nothing more than swooping in and calling for a premature termination of research into their best hope in decades.

Yes, please, I welcome the departure of Coffin and his ilk from XMRV research.

We have been royally screwed by the medical profession for many years and are fully entitled to be angry. But high-quality virologists are not the people to be angry at. I'd love to see this calibre of researcher take some further interest in CFS. That's less likely to happen if they see people accusing them of ridiculous levels of manipulation.

Having said all that, in speaking of manipulation, I wish more outside researchers were aware of the extent of manipulation that is possible with regard to cohorts. How many people in some of this XMRV research actually had the "core" illness - whatever the hell it is ? Has manipulation of cohorts taken place in CFS research ? What criteria are used ? How rigorously are they applied ?

Have researchers in past CFS research been careful in choosing their cohort ? No chance - unless they were setting out to get a particular answer, of course. Diagnostic criteria is the "elephant in the room". Have XMRV researchers been careful in choosing their cohorts ? That's a very interesting question. McClure's cohort from Simon Wessely ? Yes, that's hilarious. If it wasn't so damaging.

So we are entitled to be angry - damn right. But not at the wrong people. And I'm knackered now....What a life we lead.

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The rest of this is just emotional backpedaling to give the appearance of genuine discussion after launching a deeply fallacious rhetorical assault.

Finally, of course cohorts are important, but they represent one of about fifty "elephants in the room." Pointing out one elephant exclusively while labeling the others "conspiracy" is just diversionary.

Alter [the NIH researcher who, along with Shyh-Ching Lo, found XMRV related viruses in CFS patients] said that he does indeed believe that his group and Mikovitss group are looking at the same retrovirus. Viruses tend not to be homogeneous, Alter explained. The fact that we didnt find XMRV doesnt bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. Its not one virus. Its a family of viruses. "

Thank you for posting Mindy's interview response from Alter. It does seem to differ from this article quite a bit and she is an experienced health reporter.
Interesting that in Alters demistifying Medicine talk Alter also stated that he and Lo's work at least partially confirmed Lombardi et. al.
He did not at that time feel Lo at al and Lombardi et al were two totally seperate entitities. I don't believe he does now either from what I have heard him say.

Over and over I am finding your analyses astute and highly awake! I am not sure if you are exactly right in all respects, but the way you reason is helping me think better and see things more clearly. Thank you for your contributions.